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Coffee, Cosmos & Cavies on #WorldLupusDay

World Lupus Day
May 10, 2018

It’s been real, ya’ll.

Trying to manage All The Things in the midst of a STOOPID crazy flare (fibro *and* lupus). And, by “stoopid”…I mean bat-shit crazy levels of “oh my gods I want to run head first into a fucking wall…” 

Then, one of my guinea pigs passed away.

Y’know when you’ve been bottling shit up for eons, but don’t really know you’ve been bottling shit up, even though you probably sorta-kinda also should know you’ve been bottling shit up and then that ONE thing happens and…SPLOOSH…floodgates open down to the very fibre of your essence?

That happened. Legit.

Listen, this self-care shit is for the birds. I dunno, but try as I might, I have yet to hop back onto Slime Ranchers for a little escapism in two weeks now. And, I’d only been playing for a week. I stare at the slides of games on Steam and I just…stare. I don’t actually play. Weird. Related: The one time I sit down to write a blog post, one of my kids plopped themselves on the couch beside me and hasn’t stopped talking….

Been staggering through the PTSD brain shit from last summer and it’s frustrating beyond all reason. Thus, I am trying to also concurrently Avoid All The Things. Problem is, I’ve got a festival gathering to run weekend after this one and I’m freaking the hell out.

I have days off from work, but I tell you…I *really* wish I wasn’t working. Not for the job…oh hells bells I LOVE my job…my team mates are freakin’ the shezam!!

Physically. Brain drain. Having to manage all those Things on my own. I’d ask for help but…we know how awesomesauce I am at that.

And yet…I keep on keepin’ on. *shrugs* 

There’s a hardening of some of the tissue around my heart. Concerning. Kidney function has plateaued. Cautious. Lesions on brain. Problematic.

All the holes in my skin are finally closed up. Only took since fucking February. *biggest eye roll in recorded history*

I have kept wanting to post about my exciting new venture…making a Bucket List! Why?? Well, I’ll get to that…in another post.

So as at today’s date:

Still alive.

Still looking up to the stars every night I can see them.

Still wanting to be a part of them.

Still drinking coffee (and finding uber-tasty coffee creamer).

Still cuddling guinea pigs and doting on their little wee selves.

World Lupus Day? This is your yearly reminder that somewhere, someone is battling a life-threatening disease…and not just from the disease itself… from the Brain Trolls that shadow our thoughts and emotions day after day, month after month, year after year since our diagnosis, and through all the subsequent diagnoses since…

We fight Lupus every day.

We need compassion.

We need reprieve.

We need a cure. <3

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